A campaign is being launched at Parliament this afternoon to push for a national framework to guide the diagnosis, treatment and support of those living with a rare health disorder.
Around one in 17 New Zealanders live with a rare disorder, half of those being children.
Ours is one of just five developed countries in the world without a national framework.
Rare Disorders New Zealand chief executive Lisa Foster told Mike Hosking one in 17 Kiwis are living with a rare disorder.
"I can't understand why we don't have such a framework here, it really doesn't make sense."